Leadership team


Bina Maniar Shah

Founder & CEO

President of the Board of Directors

In 2018, Bina founded Project 8p Foundation to accelerate research with the goal of treatment for chromosome 8p heroes like her daughter Karina. Since then, she has fully committed herself to the advancement of clinical and research understanding of rare disorders, in particular neurodevelopmental chromosomal disorders such as the 8p rearrangements.  Shifting perspectives from disease specific efforts to innovative approaches that are gene-agnostic and cross disorder is a long term scalable vision of hers. As a result, she is the founding partner of the Commission on Novel Technologies for Neurodevelopmental Copy Number Variants (CNVs).

Her family resides in New York City where Bina earned her B.S. in Finance & Marketing from NYU Stern Business School as well as her M.B.A. from Columbia University. She has over 15 years of experience in finance in the areas of mergers and acquisitions, private and public equity investing, real estate development, and property management.

Bina leverages her business and entrepreneurial background and network to build bridges to improve efficiencies in a Collaborative Impact model for Team Science.

Her family resides in New York City where Bina earned her B.S. in Finance & Marketing from NYU Stern Business School

Kaiti Syverson

Kaiti Syverson

Patient Engagement Manager

In 2019, eager to learn more about her daughter’s diagnosis, Kaiti attended Project 8p’s first Family and Science Conference. Drawn to the strength of the 8p community, she left the conference with a new calling, an opportunity to serve. Kaiti immediately stepped into the Patient Leadership Board’s (PLB) Community Support Chair position, where she assisted in the creation of Project 8p’s community programs, before eventually taking on the role of Co-Chair to the PLB in 2022. While she will continue to donate her time as Co-Chair of the PLB, Kaiti is enthusiastic about her next opportunity as Patient Engagement Manager and eager to continue serving the 8p community. As a parent and peer, Kaiti is passionate about advocating for 8p heroes and has a desire to support families through their journey.

Kaiti lives in Alaska, with her husband and two children, where she also earned a B.A. in Elementary Education. She is the proud mother to 8p hero, Chloe. Kaiti is dedicated to Project 8p’s mission, she believes in the power of the 8p community and knows that together we will advance our understanding and care of the 8p heroes that unite us.

Ethan Perlstein, PhD

Research Director, Scientific CureGuide

Dr. Ethan O. Perlstein is responsible for setting the scientific direction of the Foundation. Ethan uniquely straddles the worlds of Silicon Valley entrepreneurship, drug discovery and development, and patient-led medicine. Ethan received a PhD in 2006 from Harvard University in the Department of Molecular and Cell Biology while working in the laboratory of Professor Stuart Schreiber. He completed an independent postdoctoral fellowship at the Lewis-Sigler Institute at Princeton University from 2007 to 2012.

Ethan is an author on 19 peer-reviewed scholarly publications, including the discovery of a novel mechanism of action for the antidepressant Zoloft based on studies in yeast cells.

Since its founding in 2014, he is CEO of Perlara PBC, the first biotech PBC partnering with highly motivated families to develop treatments and cures for rare genetic diseases applying “evolutionary pharmacology.” Perlara’s first joint venture Maggie’s Pearl is the commercial sponsor of a Phase 3 trial of epalrestat for the treatment of PMM2-CDG at the Mayo Clinic.  Prior experiences include the Christopher & Dana Reeve Foundation as their first Chief Scientific Officer and later as the CEO of the EveryONE Foundation (EOF), cofounded by Dr. Tim Yu and Julia Vitarello, whose mission is to make individualized medicines safe and accessible to everyone.

Travis Zack, MD, PhD

Scientific Cure Guide

Dr. Travis Zack grew up in Hawaii and went to school at the University of California, Berkeley, double majoring in physics and integrative biology. He worked in Rameen’s lab as a graduate student in the biophysics program of Harvard University. While a member of the Lab, his research focused on uncovering new cancer vulnerabilities predicted by copy-number alterations using computational genomics. After obtaining his PhD, Travis enrolled in medical school at Harvard and MIT’s Health Sciences Technology program, and is now a resident at UCSF. Travis hopes to follow in the footsteps of Dr. Beroukhim as a successful oncology physician scientist.

Fun fact: In his free time, Travis is an avid hiker and amateur gardener.

Whitney Dolan, PhD

Whitney Dolan, PhD

Research Project Manager, Scientific CureGuide

Dr. Whitney Dolan completed her PhD in Biochemistry with a specialization in Computational Life Science at Purdue University, studying transcriptional mechanisms of eukaryotic gene regulation. 

As a co-founder of a synthetic biology company, Whitney has experience leading small research teams from idea to proof-of-concept. She has also worked as a freelance science editor, helping researchers to effectively communicate their work to both scientific and lay audiences. Most recently, she was a Senior Scientist at Rancho Biosciences where she developed data processing pipelines and interactive visualizations to help both large and small pharmaceutical companies make their data FAIR.

Andrew M. Grumet

Legal Advisory

Andrew practices at Polsinelli where he is the Chair for Nonprofit Organizations. He  focuses on charitable giving and philanthropy and the representation of domestic and international tax-exempt organizations.  He counsels organizations on formation and organizational structuring, compensation and excess benefit/self-dealing advice, corporate governance, fundraising and state solicitation regulatory matters, corporate policies, UBTI issues and investments, establishment and modification of endowments and restricted funds, fiduciary duties, domestic and international grantmaking, tax and financial reporting, planned giving and special events.

Andrew partners with some of the largest multinational nonprofit organizations, foundations, mission driven companies, social entrepreneurs and philanthropists around the globe. For over 20 years, he has served as outside general counsel to numerous organizations providing practical and strategic advice. He has advised on some of the most significant transactions and projects, including, among others, structuring a variety of nonprofit/for-profit hybrids, impact investments, both social and development income bonds, one of the most historic art acquisitions in history, innovative incubator models, and some of the most widely seen cause marketing programs.

Recognizing that complex problems often require unique approaches, Andrew takes a collaborative multi-disciplinary approach to the clients he works with. His work with the Strategic Nonprofit Solutions team at Polsinelli exemplifies this approach.

As an active speaker and media contributor, Andrew has been quoted in TIME magazine, The New York TimesThe Wall Street Journal and The International Herald Tribune, among others. He serves as an Advisor to the Restatement of the Law of Charities and Nonprofits, a restatement that clarifies the law governing charities nationwide.

Josh Wolf

Josh Wolf

Finance and Operations Consultant

For the past three years, Josh (he/his) has provided finance and operation training, coaching, and services to over 100 startup and growing multi-entity social justice , rare disease, fair housing, and technology focused nonprofits.

Prior to this work, Josh served as the Chief Operating Officer for Cory Booker’s Presidential Campaign, Director of Operations for the Mozilla Foundation, Director of Operations for MoveOn.org, Director of Data Services for the Democratic National Committee, and over a decade in political organizing and management. Throughout each recent finance and operation role, Josh established and managed the technology and financial and operating systems and providers that ensured the organizations he served were resilient, sustainable, and had a solid foundation for growth.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.